Throughout your journey you will encounter all sorts of terminology. The following list is certainly not everything but it covers most of those you will hear and read about especially towards the end of life.
| Glossary of terms | |
| Actively Dying | Actively dying refers to the physical process of the body shutting down before death which may include changes in a person’s conscious state, bodily functions and physical appearance. There is no predicted timeframe for this process. |
| Advanced Care Directive | Also referred to as “living will”. An Advance Care Directive records your specific preferences for future health care. This includes treatments you would accept or refuse if you had a life-threatening illness or injury. An Advance Care Directive will only be used if you do not have capacity to make decisions for yourself or to communicate your preferences. ACD are similar for each state in Australia but are specific to the state you live. More information on our website here Also click here for the Australian Government Webpage |
| Alkaline Hydrolysis – Water Cremation | Alkaline hydrolysis uses water, potassium hydroxide (a common ingredient in liquid soap), relatively low heat (350 F/177 C) versus cremation, and pressure to reduce the body of a deceased loved one to bone fragments and an inert liquid. The process only works on protein-based materials, so the body must be dressed in certain types of natural-fibre clothing, such as silk, leather, or wool. The body is next placed within a stainless-steel alkaline hydrolysis chamber. The entire process takes roughly two to three hours, which is equivalent to the time necessary for an average cremation. Once alkaline hydrolysis is complete, the remaining bone fragments are rinsed and then pulverized to dust or “ash” (this also occurs with the bone fragments that remain after cremating a body).1 This dust can be returned to the surviving loved ones in an urn for placement in a cremation niche, scattering in a special place, burial, or any other option those choosing to cremate a loved one might select. As noted earlier, the second byproduct of the alkaline hydrolysis process is an inert liquid, which does not contain human DNA or other genetic material. After filtering and purification at a water-treatment facility, this fluid can be introduced into Earth’s natural water cycle. “cremation,” “chemical cremation,” “green cremation,” and “aquamation,” are also sometimes used to describe the process. |
| Bereavement | Bereavement is the experience of loss felt when someone dies. When someone is bereaved, they typically experience grief which can trigger a variety of feelings, thoughts, and emotions. Bereavement is recognised in the palliative care continuum because although a person receiving care has died, their family may still require varying levels of support coping with the loss. |
| Burial | Above (Crypt, Vault, Mausoleum) or below ground burial usually located in a cemetery. Deceased person is placed in a coffin and lowered into a plot following a funeral service. |
| Burdensome or unbeneficial treatment | A treatment can become burdensome or unbeneficial when there is no further therapeutic benefit to its use and the process of administering the treatment causes discomfort or distress to the person. For someone approaching the end of their life, this may include stopping any non-essential medications or making the decision not to transfer someone to hospital unless essential due to the distress it may cause. |
| Capacity | This definition differs between Australia’s States and Territories. At common law, a person has capacity (or is competent) if they are able to: comprehend and retain the information needed to make the decision, including the consequences of the decision; and use and weigh that information as part of their decision-making process. |
| Cardiopulmonary Resuscitation – CPR | Emergency measures to keep the heart pumping (by chest compression and/ or use of a defibrillator) and assisted ventilation when the heart and/or breathing have stopped. To perform CPR, a person must perform a combination of physical techniques including chest compressions and mouth to mouth breaths. These maneuvers keep blood and oxygen moving within the heart and body. CPR alone cannot reverse an underlying problem that causes a person’s heart or lungs to stop. |
| Chronic Disease | Chronic diseases are health conditions that last for six months or longer. There are many chronic diseases that impact people’s day to day lives in different ways. Some conditions like heart disease or diabetes require ongoing specialist medical care and can significantly restrict a person’s lifestyle. Not all chronic diseases are considered life-limiting conditions though and many people living with a chronic disease will not have a shorter than expected lifespan and will die of natural causes. |
| Complimentary Therapies | A wide range of alternative treatments and practices are readily available including acupressure, acupuncture, aromatherapy massage, breathing, hypnotherapy, massage, meditation, music therapy, reflexology, and reiki to name a few. |
| Counselling and Support | Talking to a Counsellor, Psychologist or Social Worker who can provide support in understanding worries and concerns to help cope with changes in your life. Group support is also available and beneficial for people with a life-limiting illness and/or their carers. |
| Cremation | Disposal of a person’s body inside a purpose built cremator in a coffin or shroud exposing to extremely high temperatures for 1-2 hours. Remaining ashes are returned to family to scatter, bury or place in receptacle. |
| Cryonics | Cryonics is the preservation of the human body at cryogenic temperatures (−196°C) in the expectation that future medical technology may be able to repair the accumulated damage of aging and disease at the molecular level, and restore the patient to health. |
| Curative care | Curative care is a term used by health professionals to acknowledge the intention behind some medical treatments or interventions. When the treatment offered for a condition is considered curative, it is expected to remove the heath problem completely. In situations where a person is living with an advanced disease that cannot be cured, a person may still receive a curative treatment because it will relieve them of uncomfortable symptoms but not because it can change the course of their illness. |
| Dementia | Dementia is a term used for a number of progressive disorders of the brain that cause confusion or memory loss as well as difficulty with language, problem solving and performing day-to-day tasks. Alzheimers is the most common form, however other types include vascular, fronto-temporal and Lewy Body dementia. All types of dementia are life-limiting conditions. Dementia is more common for older people however, not all people will develop dementia as they age. |
| Delirium | A sudden altered conscious state experienced by people when they are unwell. When a person develops delirium, they may become confused, lose attention quickly or become agitated and irritable. If a person is already living with dementia, developing delirium may increase their confusion or exacerbate their behaviour. Delirium is more common in older people, particularly those living with dementia. It is brought on when a person experiences physical changes due to illness (eg. infection, pain from an injury) or as a side effect of treatment (eg. after an anaesthetic or a change in medication). This is a temporary state and can be improved by providing a safe, calm environment and treating any underlying physical causes. |
| Drug Therapy/ Clinical Trials | Clinical trials test new treatments, new ways of giving existing treatments or new combinations of treatments. They also find ways to improve the quality of life of people affected by cancer. Drug Therapies include Chemotherapy, Hormone Therapy, Immunotherapy, and Targeted Therapy. |
| End of Life | End-of-life is the timeframe during which a person lives with, and is impaired by, a life-limiting/ fatal condition, even if the prognosis is ambiguous or unknown. Those approaching end-of-life will be considered likely to die during the next 12 months. |
| End of Life care | End of life care is specific care provided to people when their health has irreversibly declined, and they are expected to die within the next 12 months or sooner. For a person living with a life-limiting condition, this may involve taking a palliative approach to care and preferring treatments that provide relief from uncomfortable symptoms over life prolonging interventions. |
| Frailty | Frailty can be a temporary physical state following a severe illness or a chronic condition a person lives with. Persisting and progressive frailty is more common in people of older age (70 years and above) and can make a person more susceptible to injury or illness, particularly when they have other comorbidities. Signs of frailty measured by health professionals include unintentional weight loss, muscle loss/weakness, feeling fatigued, low levels of physical activity and reduced walking speed. |
| Functional Ability | Within aged care homes, a person’s functional ability is determined by how effectively they can perform activities of daily living. When health professionals assess functional ability, they observe whether a person can complete everyday tasks such as walking, bathing or eating a meal. These assessments are used to determine how much assistance a person may need. |
| Goals of Care | These are the decisions that should be reviewed regularly about what medical treatments a person would want to receive currently and includes preferences for resuscitation (CPR), being transferred to hospital, or choices about curative treatments versus comfort care. These decisions are made collaboratively to reflect your family member’s wishes, their current health, and what treatments would be medically appropriate. |
| Holistic Care | Care of the whole person. It can include different types of therapies and services to meet a person’s physical, emotional, cultural, social and spiritual needs. |
| Intubation & Ventilation | Medical processes used when a person is unable to breathe for themselves. Intubation is the passage of a tube (usually through a person’s mouth) into their lungs. Ventilation is the act of passing air through the tube. |
| LGBTQIA+ | People who identify themselves as lesbian, gay, bisexual, transgender, intersex, queer/ questioning, asexual and/or other diverse sexual orientations and gender identities. |
| Life Expectancy | Life expectancy is one of the most commonly used measures of overall health of a population. It is expressed as either the number of years a newborn baby is expected to live, or the expected years of life remaining for a person at a given age and is estimated from the death rates in a population. Examining causes, patterns and trends in death can also help explain differences and changes in the health of a population, contribute to the evaluation of health strategies and interventions, and guide planning and policymaking. Current life expectancy in Australia is; 80 yrs for males, 85 yrs for females. A child born today may have a life expectancy of 83.3 yrs. |
| Life Limiting Illness – Condition | A life limiting condition is a disease, condition or injury that is likely to result in death, but not restricted to the terminal stage when death is imminent. When a person is diagnosed with a life-limiting condition, it is expected they will die as a direct result of their illness and not of natural causes. Many individuals live with a life-limiting condition such as dementia, heart or lung disease or a neurological disorder. |
| Life-Prolonging Measure | A life-prolonging measure means a medical, surgical or nursing procedure directed at supporting or maintaining a vital bodily function that is temporarily or permanently incapable of independent operation and includes assisted ventilation and cardiopulmonary resuscitation. |
| Malignant | Cancerous, malignant cells can spread (metastasise) and eventually cause death if they cannot be treated. |
| Medical Decision Maker – Previously “Medical Power of Attorney” | A medical decision maker is a trusted relative or friend to manage your health care. The person/s you appoint become your substitute decision-maker if you are no longer able to make decisions. Your medical treatment decision maker/s can consent to or refuse treatment on your behalf. They must act in accordance with any lawful limitations or conditions contained in the form. They must make the decision they believe you would make if you could make your own decision. For this reason, it is helpful to talk to them about what is important to you and any preferences you have. If you have appointed a medical enduring power of attorney, an enduring power of attorney, or enduring power of guardianship prior to 12 March 2018, these are still valid. Click here for more information in Victoria Click here for more information in New South Wales Click here for more information in Queensland Click here for more information in Tasmania Click here for more information in South Australia Click here for more information in Western Australia Click here for more information in Northern Territory Click here for more information in the Australian Capital Territory |
| Metastasis | Cancer that has spread from a primary cancer to another part of the body. Also called secondary or advanced cancer. |
| My Aged Care | My Aged Care provides the information and support needed by consumers to understand, access and navigate the aged care system. My Aged Care can be accessed online, on the phone or in person. My Aged Care provides: information on the different types of aged care services available an assessment of needs to identify eligibility and the right type of care referrals and support to find service providers that can meet your needs information on what you might need to pay towards the cost of your care. Here is a link to the official website |
| NDIS | The National Disability Insurance Scheme (NDIS) supports, support a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers. Here is a link to the official website |
| Palliative Approach “Palliative care/ Continuum” | A palliative approach is an approach taken when planning care or making medical treatment decisions where the priority is on maintaining relief from distressing or uncomfortable symptoms over curative interventions. The palliative approach identifies the limitations of curative therapies for a person living with the advanced stages of a life limiting condition and aims to implement treatment choices that promote a better quality of life over life prolonging measures. |
| Palliative Care | Palliative care is high quality health care and support for people living with a life-limiting illness and their families. Palliative care helps people to live as well as they can by managing pain and symptoms to ensure their quality of life is maintained as the illness progresses. Palliative care identifies and treats symptoms and issues associated with life-limiting illness which may be physical, emotional, spiritual or social. Palliative care is a family-centred model of care, meaning that family and carers can also receive practical and emotional support. Palliative care is about maintaining quality of life. The aim of palliative care is neither to hasten nor postpone death. Rather, the focus is on living as well as possible, for as long as possible. |
| Palliative Care Team | The Palliative care Team is made up of people with different skills to support people with a life-limiting illness. They include: your GP, Specialists, Palliative / District Nurses, Nurse practitioner, Pharmacists, Counsellors and Social Workers, Occupational Therapists, Dietitians, Physiotherapists, Volunteers, Carers. |
| Person-centred Care | An approach to care which recognises each person as a unique individual within the context of their health needs and as a social being. It involves seeking out and understanding what is important to the person, their families, carers and support people and working together to share decisions and plan care. |
| Quality of Life | Quality of life is a term used to capture how satisfied a person perceives their life to be in a holistic sense. When used in the healthcare context, this includes a persons’ physical, psychological, social and spiritual wellbeing. |
| Respite (short term care) | Respite provides a break in the demands of caring for someone during their illness. Respite can be arranged for a couple of hours, overnight or several days/weeks in your home or in a facility or hospice. Costs may be incurred for this support. |
| Symptoms | Symptoms refer to physical or mental changes that occur as part of a disease process or as a result of treatment/intervention. For example, a person may experience pain, nausea, loss of appetite, breathlessness and fatigue. |
| Terminal Illness | An illness or condition that is likely to result in death. The terminal phase of a terminal illness means the phase of the illness reached when there is no real prospect of recovery or remission of symptoms (on either a permanent or temporary basis). |
| Terminal Phase | The terminal phase is used to describe the final hours or days before a person dies. At this point, a person may require specific medication and care to provide them comfort from symptoms as they begin the process of actively dying. |
| Transfer to Hospital | Transfer to hospital may occur to manage difficult symptoms or management of an incident that cannot be provided at home and/or carers are no longer able to provide adequate care at home. A person’s choice and ADC decisions already made should always be considered before they are transferred to hospital. |
| Voluntary Assisted Dying – VAD See also Assisted Dying | The act of legally administering a substance with the aim of ending a person’s life. Also refers to the steps and process related to that administration. Currently legalised in all states of Australia except NT. |
| Young People and Children | Support for children up and their families is available including Palliative Care and bereavement, education and financial guidance. |